Tag: caring for parents with dementia

What I Wish I Knew When Dementia was Diagnosed: Find Joy in the Journey (#3)

journeyjoyThe last of the three things I wish I knew when my parents were simultaneously diagnosed with dementia was how important it was to find joy in the journey for everyone.

The care aspect for me, unfortunately, eclipsed my recognition that my time would have been better spent enjoying my parents. I spent a lot of time managing medical appointments and follow-ups, and I wish I would have instead used it to take Dad to a movie, or play cards with my Mom.

My parents thankfully had the means to pay for me to bring in an Aging Life Care Manager, but at the time I didn’t even know they existed. What I do know is that once I finally learned and recognized how they could help, I had already spent weeks of personal time trying to manage medical issues for my parents who could no longer be their own advocates.

After bringing in an Aging Life Care Manager, I saw how they could find a solution or resolve an issue that was taking me hours to troubleshoot. They are typically social workers and Nurses who are trained and certified experts in aging well.  You can search for one in your area here. 

I still remember the ache of missing my parents when they were sitting in front of me. The dementia had changed their personalities and behavior but often glimpses of the parent I knew would shine through.

There were hilarious and devastating moments.  I learned how to laugh and bring my parents in on the humor and worked very hard to shield them from the moments when my grief would bring me to tears.

You don’t know what you don’t know (and I certainly didn’t at the time). I hope my three wishes can help better serve you and your loved ones after a diagnosis of dementia. Refected.

What I Wish I Knew When Dementia Was Diagnosed: The role of Palliative & Hospice Care (#2)

Palliative-vs-HospiceMy parents and in particular my Mom often shared that QUALITY of life was her goal, not QUANTITY. After a diagnosis of dementia which can result in death, I had an ongoing struggle with what was important to do to honor my mother’s wishes.

The lines between “palliative care” and “hospice care” are confusing but they both focus on providing comfort. Palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness. These lines are kinda blurry with dementia since there really is no “treatment” or “cure” (YET). 

I wanted to manage and strive for quality of life, keep Mom comfortable, but be mindful that we were not providing things that could extend her life.

When Mom started to refuse to take the anti-anxiety medication the care community was delivering, I realized that it was being delivered with a host of vitamins. Was it important to give my 80-year-old mother a multi-vitamin?

My Mom didn’t really like taking pills, so delivering 4, of which one was really important to minimize her stress became the only one I asked them to deliver. I followed up with the doctor who agreed that the other pills were not really necessary and her medication regimen was updated.

When Ensure was recommended as an addition to her meals, I asked more questions to make sure it wasn’t been forced or delivered as a meal replacement over providing her with food options she would still eat.

Apparently dementia and age can impact your taste and there seemed to be a strong preference for salty and sweet foods. She was never much of a salad or veggie person and it seemed odd to start worrying about nutrition when she often couldn’t remember names or faces. I didn’t want her to be hungry, but I also wanted to let her have some control even through her diagnosis over day-to-day choices.

My toughest challenge was when her hip broke and the doctor insisted we lift the DNR (Do Not Resuscitate) order for her so they could repair her broken joint. At 83 and very frail, there was no way she would have survived the surgery and they agreed to move her into Hospice Care. Over the previous year, she had been in and out of Hospice Care as she continued to weaken. However, with the addition of the broken hip, we now had the option to keep her comfortable with morphine that would eventually end her life.

These were difficult and guilt-inducing decisions, but I always worked to meet what I believed to be my mother’s wishes. Knowing these options may not just better serve the comfort, but also allow you to focus more on enjoying time with your loved one than managing medical matters.

Would the vitamins and Ensure prevented the eventual hip break? I will never really know but after caring for two parents now realize how important it is to let the will of the individual influence their daily choices, even after a diagnosis of dementia.

You will have a lot of options and choices to make over the course of your journey. Just know you will make the best decision you can with the information you have at the time you need to make choices for your loved one. Hospice can be a valuable option during your care journey. Reminded. 

 

What I Wished I Knew When Dementia Was Diagnosed: Anosognosia(#1)

I was recently asked this question at a Caregiver Advisory Panel and there are 3 things I wish I had known when dementia was FINALLLLLYYYY diagnosed.  The reality is that many things can cause memory issues and it’s important to seek out a doctor to help determine if there is something that could easily resolve cognitive issues. There are many times when a medication conflict or a vitamin deficiency can be a root factor.

I had two parents who were simultaneously diagnosed with different types of dementia (Mom was Vascular/then Multi-Infarct; Dad was Alzheimer’s). While my Dad seemed to understand something was wrong, and a few times over the course of being his adult family caregiver he asked me about Alzheimer’s, my Mom patently denied having a stroke which led to her initial vascular dementia diagnosis.

anosognosia-1

I thought she was just being stubborn which made things pretty difficult for all of us. When I learned about anosognosia, a word of Greek origin that roughly translates to “without knowledge of disease,” things made a lot more sense to me. I had learned to adapt because my Mom would not, but then once I learned of this, I understood that she really COULD NOT adapt.  In general, the person is unaware of their condition and unable to accept it.

My Mom was not simply in denial or being stubborn, her brain could not process the fact that her thoughts didn’t reflect reality. I did recognize that she would often confabulate information. Sometimes it was hilarious and other times it was tragically sad.

Knowing this can provide some insight into how you can best help someone diagnosed with dementia. I hope it can help make your journey with your loved one a little easier. Reflected. 

Get Health Screenings Done When Recommended – Healthy Aging Habit 24

healthscreen

If you are seeing a good primary care physician, hopefully once a year, they will perform some basic screenings based on your height and weight, blood pressure and health complaints.

I’m not a doctor, but culled information online and am sharing what I found. This is not a substitute for medical advice and I encourage you to regularly see your primary care physician who will help you know when screenings are right for you.

In general, everyone should be seeing a dentist at least annually if not twice a year. Oral hygiene is a major component of good health.

In general, your doctor will perform or recommend regular screenings for:

  • Cholesterol
  • A full body scan for moles or skin lesions if you have a familiar history

For women: Breast, pelvic, and pap smears

For men: Testicular

For women at 40, Mammograms are recommended unless there is a familiar history and then this is usually done earlier.

For men, at the age of 50 they recommend prostate screenings unless you are a high-risk individual then you start typically start at the age of 40.

50 is the magic number for a colonoscopy. If there is a familiar history, it is ten years earlier than the youngest family member with colon cancer.

At 65, it is recommended that men and women should have a bone density study every 2 – 5 years; this may start at the age of 60 if you’re in a high-risk population.

For those of you caring for loved ones with dementia, I will leave it up to you to determine how to manage preventative health care recommendations. I do know that I had to fight a regular battle with her care community over vitamins and supplements. I also struggled with the recommendation to add Ensure to her diet. My Mom was very clear that she wanted quality of life over quantity. I believed that she should eat what she wanted. It was the one thing she could choose to do and control.

I hope you will discuss these issues with you, or your loved one’s doctor. Early detection can not just save your life, but afford you a much better outcome. Suggested.

Get an Annual Flu Shot and Consider the Recommended Vaccinations – Healthy Aging Habit #23

flu shot

As a caregiver, I started to think about how my health (or poor health) would impact my parents. I didn’t want to be the one to bring the flu to them, so made sure I got annual flu shots. I avoided the shots for years thinking that having a dead virus shot into my arm sounded kinda gross … it still does, but know I know the value of avoiding the flu for myself and others.

In my role as a Daily Money Manager, I research varied ways to save my clients money—from simple things like reviewing phone and cable plans to bigger issues like refinancing and downsizing options.

At a training workshop, I learned that the lack of vaccinations is estimated to cost the American people $15.3 billion. It never dawned on me how much money NOT getting a flu shot costs me either directly on medication and doctor visits, or indirectly through lost wages and discomfort.

In addition to the flu vaccine, three other vaccinations. Some are recommended for adults over 60, but for many it may be a good idea to get it early.

Ask your doctor about these vaccines for those you are caring for, but they might also benefit you and I hope you will discuss them with your doctor.

  • Shingles or herpes zoster vaccine — if you know anyone who has developed shingles, you know how debilitating it can be. The healthcare cost of treating shingles is estimated at $1 billion a year. There are more than one on the market now and they are hard to get. Get on a waitlist if they are out at either your doctors or a local drug store.
  • Tdap — while many of us with kids still in the household are familiar with this vaccination, only 16% of adults over 65 have gotten it. My son received the vaccination that includes vaccines for tetanus, diphtheria, and pertussis but did contract whooping cough. It was awful in a 13-year-old, but apparently, it’s even more devastating for adults. Next time you need a tetanus shot, ask if you can get Tdap instead.
  • Prevnar 13 and Pneumovax 23 for the prevention of pneumonia, which kills more annually than any of the others mentioned.

The annual flu shot is now a household habit and the I’ve already discussed the other vaccinations with my primary care physician. Completed.

Talk to your Children about your Healthy Aging Choices and Listen to What They Say – Habit #22

funnyquotesagingparent

As an adult child that lived through caregiving for two parents over 5 years, and as a parent of two children, I have been very open about how I believe families should function in terms of support and care.

My parents planned well thinking that they would never “be a burden” to their children. However, when they both ended up with dementia, a family member needed to be intimately involved in their care and well-being. The hard part for me was that my parents firmly believed they never needed any help and half of my caregiving battle was managing around their inability to see how they were failing.

As my children grow and one now has flown the coop, I plan to be open with them when it comes to discussions about our care and well-being. If and when they are managing their own careers and raising their own children, I will make sure to regularly check in to listen to them on how and if they could help. I want them to have their lives, but I do also hope that I can rely on them to at least have general oversight if my husband and I should we need it. There are options for us if they can’t help.

I know that I can hire specialists to help with the day to day needs. I don’t expect my kids to do it for me. But I also know that family knows best and would prefer if one or both of my children would be a POA or Trustee for us when they are ready to step into that role.

What I find most interesting is how many adults with children over 30 are reporting that their kids won’t listen to them when they try to share their plans or discuss their finances. Maybe for many it feels like a weaponized conversation about inheritance or their adult children just aren’t ready to have it.  What I do know is that you better have had this conversation with the people you are counting on to help you before the help is needed. Experienced.

Write or Print out Your Usernames, Passcodes, PINs, and Security Questions and Answers – Healthy Habit #18

digitalkey

Passcode keepers and your browsers’ ability to save access codes are time savers. However, should you have a shared household, need to step in and help someone, or have someone step in and help you – without this information the inability to access your online accounts can be a huge roadblock.

I know we have been told NOT to write down this information for years; I get that for employers who have IT departments who can reset your access. At home, we don’t have that system and having this written down will save you time and frustration.

How many times has your answer to your own Security Question been rejected? Every time I do a public speech on What to Save and What to Shred, this question always gets an uncomfortable laugh as half the room raises their hand to admit this has happened to them.

Have you ever needed to contact your phone provider or the power company and the account is in the name of your partner, roommate, or spouse?  If so, you will know that you will be unable to make changes or service specific account needs if the person to whom the account is titled is not on the call with you. For the variety of accounts that fall into this category, I learned long ago to login as the owner of the account and handle our service needs in the portal. Saves ME time and allows both me and my spouse to fill in for each other should we be traveling or unavailable.

I have a book that my husband and kids are familiar with that includes all of my usernames, passcodes, security questions/answers, and PINs. I use the book every week to quickly look up or update my online accounts. The average consumer has 90 online accounts, and as a business owner, I have closer to 150 accounts.

My husband and kids also have documented and shared their information in case I ever need to step in and help them. For my kids I told them to put it in a sealed envelope I would only open in an emergency. It was an easy ask since they knew I had already provided them with an option to access my accounts. Parents have no online access rights to their children’s accounts.

The good password keepers have an option to print out a summary and I hope you will do that. In many cases, I have families that have shared this information in a document on their computer only to find out that no one knows the passcode to get into the computer. So I just recommend you have one option be paper access that can be stored in a safe or even hidden in plain site.

I guarantee having this will save you time and angst and be a huge help to those that may need to access your shared accounts when you are not home, or provide them with the keys to your digital legacy should they want to protect it and you are unable to do so. Advised.

Brush, Floss, and Visit the Dentist Regularly – Friday the 13th Healthy Habit

lifeisbetterwithteeth

If you don’t know, oral health has a link to your general health. You can get a deeper dive on the topic and the related health conditions from Mayo Clinic.

There are many reasons why brushing and flossing are healthy habits, but it’s also important to see your dentist regularly.  They may catch oral cancers early when they can be more easily treated. While my father had Alzheimer’s, a tumor at the base of his tongue is what ultimately took his life. I had tried many times to get him to the dentist before we knew about the tumor,  but he just refused. In reflection, I wonder if somehow he knew. He had always been a good dental patient before the diagnosis.

If you are caring for someone with cognitive issues, be kind to yourself if they just refuse. In some ways it maybe the one way they feel control over their lives.

As difficult as it was to see my Dad’s physical pain and suffering the last month of his life, I also feel he was blessed to get to take a celestial departure before he lost more of himself.

The habits we develop and maintain can carry us and help us maintain good health. I often have to remind myself of that when I’m waiting for my tooth brush timer to end. Brushed.

Break a Habit of Drinking Alcohol #6

drinkinganddementiaOne of my big fears after caring for my parents is that should I lose my short-term memory, I will also lose the ability to know that I have had more than one, or even two drinks.

I have yet to see alcohol on any healthy diet without an asterisk next to it. I’m always intrigued to read interviews with octogenarians (and older) to learn what they chalk up to their healthy aging habits. I swear that a snifter of whiskey or brandy has been in the largest majority of those I have read.

What I do know is that the habit of “quiet hour” honed over 5 decades of marriage became a problem for my parents when they lost their short-term memory. Instead of stopping at one or two drinks, they started to drink more. It was one of the most obvious signs to their adult children that something was different with our parents.

During this period we learned that there is a form of dementia that is a result of alcohol abuse. Drinking and drug use is proven to kill brain cells faster than aging alone. You can learn more about these impacts on this page at the American Addiction Center.

At first we thought my Dad’s quietness and forgetfulness were because of the increased drinking. We later learned that he had Alzheimer’s. Had there been no habit of drinking, we may have gotten to an answer sooner.

During this time, I was able to encourage my parents to purchase Umbrella insurance. I was terrified that their actions could hurt someone and they could lose all of their savings.

If you have a study that shows that alcohol does lead to healthy aging … please share! My belief is that like many things, moderation is the key. My goal is to age without a habit of drinking alcohol. Aspired. 

Create an Exercise Routine you can Stay With – Health Habit #5

newto

As imperfect as it might be, I love my FitBit. I can track how much I’m moving each day. A recent New York Times Magazine story on How Many Steps Should You Take In a Day concluded that at 7,500 the benefits of walking on your fitness plateaued in older adults.

Current recommendations by the United States Department of Health and Human Services now includes Alzheimer’s disease, depression, anxiety and insomnia and recommends that adults get at least 150 minutes of moderate-to-vigorous exercise a week. That follows the original recommendations from 2008 that reported activities like brisk walking or raking leaves lowered the risk of diabetes, certain cancers and cardiovascular disease.

A year ago I restarted a morning walking routine with a neighbor. We both immediately recognized what a difference the morning walk made to our mood and lament the days we miss our early morning ritual.

There are a wide variety of low impact activities that can be done. The hard part for me has been tracking the activity which goes back to my love of the FitBit. It tracks my steps, my heart rate and my sleep.

If you are caring for a loved one, you might consider getting them a FitBit or Apple Watch. It can give you insight into how much they are moving during the day. The Apple Watch 4 also has some fall detection options that might be helpful. However, what I do know is that many people are not interested in trying out a new technology and that might be something you can’t overcome. I think it’s worth trying. I found that my Dad with Alzheimer’s did better when he exercised – but it was hard for him to manage it on his own. When I visited, I always tried to at least incorporate a vigorous walk and when I had more time would drag him to the racquetball court only to take a beating.

I think that a habit of exercise follows Newton’s First Law and a body in motion stays in motion. Believed.

Follow the Science on How Brains Age – Healthy Habit #2

followthescience

I wanted to understand how I could perhaps better recognize, prepare, and hopefully avoid the fate of my parent’s who both were diagnosed with different forms of dementia. One of the best things I did was to go through the Total Brain Health Certification. I met the founder Dr. Cynthia Green when we both appeared on The Dr. Oz Show.  Her book Total Memory Workout is a great primer on simple ways to maintain brain health and boost your memory.

The reality is that the common belief that “forgetfulness” is a normal sign of aging is false. Our brain processing slows down usually starting in our 50’s but the inability to recall information or short-term memory loss are signs of disease, not a typical reality of aging. But A LOT of people believe it and tell themselves it is normal.

If you understand how your brain ages, as well as how some of the changes in our brains actually make us MORE trusting (and why older adults are easier targets for fraud), you will be better able to plan and put systems in place to safely live well.

If you start to notice changes, you can then talk with your doctor. There are many things you can do if you catch issues early and some of them are entirely reversible.

If you have a loved one who is showing signs of memory loss, I hope you will raise the issue with them. I certainly tried with my parents. My Dad was open to pursue testing and investigate while my Mom shut down the idea that something was amiss. It took several years and many doctors before we found someone who would help us understand what was happening to our parents. Unfortunately, it was too late to do anything … and maybe there was nothing to be done. However, it would have helped if we could have talked through their wishes knowing a diagnosis of memory loss was made.

In the case of your brain health, knowing will afford you a lot more options. Recommended.

Here are a few articles to get you started:

Age-Associated Financial Vulnerability: An Emerging Public Health Issue Annals of Internal Medicine Annals of Internal Medicine – December 1, 2015

Supplements for Brain Health Show No Benefit – a Neurologist Explains a New Study The National Interest – June 28, 2019

Why It’s Easier to Scam the Elderly NPR – December 6, 2012